Jane’s Story is an informative and moving short video that captures the experience of living with Familial Dysautonomia (FD) through the personal story of the Pearl family,.
FD is a rare Jewish genetic disorder that affects the autonomic and sensory nervous system. Jane and Ian’s son, Chanochi, was diagnosed with FD at five months of age. This video introduces the gorgeous Chanochi ,who is now nearly three, and provides an incredible insight to the daily challenges that he and his parents face trying to manage this disabling condition.
TO SEE THIS VIDEO, please click on Jane’s Story or go to ‘personal stories’ in our Jewish genetic disorders section.
FOR MORE INFORMATION ABOUT FD, please click on familial dysautonomia or visit our Ashkenazi disorders section.
Jnetics would very much like to thank Lucie Kon and Dominic Staveacre for their work on this video. Enormous thanks also to the Pearl family for sharing their personal story and their continuous help with our awareness raising efforts.